Monday, April 2, 2012

Her soul IS great.

Today is one of THOSE days.

Actually, it started yesterday after watching a talk from Robert A. Rasband, President of the Seventy of the Church of Jesus Christ of Latter-day Saints. You can watch it here.

The talk is about the greatness of souls. It talks about the burdens of parenting a child with special needs, and the beauty of parenting a child with special needs. But, you can watch it and see for yourself. You will probably get your own interpretation because that’s how these talks work. This is just my own reaction to what I heard spoken to me.

Anyway, the talk began by making me realize how very blessed we are that Leah is so healthy and is doing so remarkably.

Then I switched gears and started thinking, No, this actually kinda sucks. Why does MY kid have to have Down syndrome…

Next came…

Why did Heavenly Father send her to us, why does SHE have to struggle so much?

If people who are born with, or develop disabilities are so magnificent in the eyes of heavenly Father and Jesus Christ, why do they have to experience so much hardship?


That was what I felt next.

Grateful for all of the love that has been shown to us.

Grateful for the service we have been given that I am not sure I will ever be able to repay.

Grateful for the support that amazes us.

Grateful for the spirit that is guiding us.

Grateful for the gospel and the strength it has given me.

After the talk was over, I started the whole process again.

I cried.

I whined.

I questioned.

I argued.

I realized.

I understood.

This talk drew so many emotions in me, which I really needed to feel.

But those emotions aren’t always fun.

They hurt.

Today, Leah has her last IFSP review.

Today, I will go through these emotions probably another 100 times.

But through all of it…

I KNOW Leah is blessed.

I KNOW we are blessed.

I KNOW the worth of her soul is great.

I KNOW Heavenly Father is with us.

I KNOW we have heavenly messengers around us who have done more for my family in the past 2 ½ years than most people have experienced in their lifetime’s.

I KNOW one day Leah’s body will fit the perfection of her soul.

I KNOW this was all part of a plan that’s bigger than me.

I KNOW it’s going to be ok.

(But sometimes I wish I didn’t need to know it all.)

Monday, March 26, 2012

Who Will She Marry?

We’re back again.

Leah is well.

Sometimes a little too well! :)

Honestly, we are still trying to figure out where we fit in.

Leah is still making huge strides!

Her only “real” delay is in her fine motor skills, and we’ve changed therapists to one who will hopefully help them improve.

Our previous therapist was a really wonderful woman, but she had limitations set for Leah, so Leah was limited. The new therapist is already challenging Leah, she understands my desire to push Leah, and she will not give her an excuse because she has Down syndrome.

Before I made the change official, I spoke to the therapist to make sure she understood my wishes.

She did!

Leah is really amazing.

She has the appearance of Down syndrome.

She has the traits associated with Down syndrome.

She has some health concerns which are common with those who have Down syndrome.


She is cognitively at an age appropriate level.

She speaks at an (almost) age-appropriate level.

Physically, she is only minorly delayed.

She is severely delayed in her fine motor skills, but I know that will change pretty rapidly with this new therapist, just as it did when we switched to an appropriate level of services with her new physical therapist.

But, Leah has Down syndrome.

None of her accomplishments are common with children who have Down syndrome.

All kids have unlimited potential, including those with disabilities.

But, Leah is shattering a glass ceiling.

Most of her friends are too, but not as quickly.

Those who shared the same level of accomplishments a year ago are falling behind.

It is so hard for me to brag because I don’t want to hurt anyone’s feelings.

I don’t want people to think I am boasting or prideful.

I don’t want to seem like I’m ever saying my kid is better than anyone else’s.

I don’t want to ever hurt anyone’s feelings…

But, I’m a Mama, and what Mama doesn’t want to brag?!

My heart is sad every time I see someone comment on my Facebook posts that they wished their child did what Leah was doing.

I wish they were too!

I wish we were all experiencing the same miracles.

I wish all of our kids were so healthy.

I wish I knew where we fit in.

We don’t fit in with typical kids because Leah has Down syndrome, we don’t fit in with kids who have Down syndrome because Leah is so untypical.

I know I’ve said this before, but it really is a difficult place to be in.

I wonder who Leah will marry?


Say she continues on her same path.

Say she has a normal IQ and becomes a teacher or something?

What typical boy would want to marry a girl who has Down syndrome?

And honestly, if she is typical in every way besides her appearance, would she want to marry a boy who has Down syndrome?

I just see her heart getting broken.

And, it breaks my heart.

Don’t get me wrong, I am incredibly grateful for the amazing blessings we have been given.

I will be happy with any boy Leah chooses to marry, as long as he is a good boy, and LDS! ;)

I am as impressed with Leah as anyone else is, but I have to understand her limits too.

What mom doesn’t think about who their kids will marry every now and then.

But, who is she limited to?

Where do we fit in?

How do we take joy in our accomplishments when they don't fit in with anyone else's?

Who can we share all of our joy with when no one is at the same place?

Leah's delays make her obviously behind typical kids.

Leah's accomplishments make her ahead of kids with Down syndrome.

If there is someone out there who understands willl you please introduce yourself?!

We could really use some friends right now.

I am tired of comparing Leah, or having Leah compared to other kids and I just want to fit in somewhere!